title: Advance directives, control, and quality of life for persons with disabilities.
abstract: BACKGROUND
  Personal control over end-of-life (EOL) care via advance care planning is a key component of high-quality care. Although this desire for control has been well documented in some populations, EOL care issues are not well understood within the disabilities community.
  
  
  OBJECTIVE
  The objective for this study was to describe the relationships between individual demographic characteristics, health-related quality of life, health locus of control, and attitudes toward advance directives (ADs) in individuals who are disabilities activists.
  
  
  METHODS
  We surveyed 55 participants attending a disability conference. Instruments included a demographic data sheet, the Advance Directive Attitude Survey (ADAS), the Multidimensional Health Locus of Control scale, and the Functional Assessment of Non-Life Threatening Conditions quality of life (QOL) scale.
  
  
  RESULTS
  Most participants were Hispanic females with some college education. About 46% had a disability. Group means revealed a high level of QOL (M=75.72, SD=19.09) and a positive attitude about ADs (M=66.49, SD=8.03). On the Opportunities for Treatment Choices subscale of the ADAS, activists without disabilities (M=14.23) were more positive about their control over EOL decisions than were the activists with disabilities (M=12.97) [t(2,52)=2.116, p<0.05].
  
  
  CONCLUSIONS
  Although participants were positive about ADs, differences in attitudes about control over opportunities for treatment choices between the nondisabled and disabled groups support previous findings that people with disabilities may have concerns regarding undertreatment for serious health conditions. Further study of EOL care issues for persons with disabilities is warranted.
authors.affiliation: School of Nursing, University of Texas, Austin, Texas 78701, USA. dvolker@mail.nur.utexas.edu
authors.forename: Deborah L
authors.initials: DL
authors.lastname: Volker
authors.forename: Chris
authors.initials: C
authors.lastname: Divin-Cosgrove
authors.forename: Tracie
authors.initials: T
authors.lastname: Harrison
mesh_terms: D000328:Adult; D016223:Advance Directives / Q000523:psychology*; D001294:Attitude to Health; D003625:Data Collection; D006233:Persons with Disabilities / Q000523:psychology*; D005260:Female; D006801:Humans; D007389:Internal-External Control; D008297:Male; D008875:Middle Aged; D010344:Patient Advocacy / Q000592:standards*; D057240:Patient Preference; D011788:Quality of Life; D013727:Terminal Care / Q000523:psychology*; D013781:Texas; D055815:Young Adult